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von Hippel Lindau Disease Prevention and Screening

Von Hippel Lindau Disease Screening

Screening exams are important medical tests done when you’re at risk but don’t have symptoms. They help find disease at its earliest stage. In von Hippel Lindau disease, early diagnosis increases your chance for successful treatment and better quality of life.

Screening Guidelines for People with VHL Disease Who Do Not Have Symptoms

10 Years Old and Under

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Thorough eye exam at diagnosis and every year
  • Ultrasound (link to definition) of the abdomen at diagnosis and every two years
  • CT (computed axial tomography) scan (link) or MRI (magnetic resonance imaging) (link) if a problem is found on the ultrasound or if laboratory tests for pheochromocytoma are abnormal
  • MRI of the brain and spine if you have neurologic symptoms
  • Tests for pheochromocytoma at diagnosis and every year if you have a family history of VHL 2 or mutations associated with VHL 2. If you have a family history of VHL1 or a mutation not associated with pheochromocytoma, you may want to be tested every two years
  • Tests for pheochromocytoma before any surgery
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance

10 to 15 Years Old

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Eye exam at diagnosis and every year; every six months during puberty
  • Ultrasound of the abdomen at diagnosis and every two years
  • CT (computed axial tomography) scan or MRI (magnetic resonance imaging) if a problem is found on the ultrasound or if laboratory tests for pheochromocytoma are abnormal
  • MRI of the brain and spine at diagnosis and every year
  • Tests for pheochromocytoma at diagnosis and every year in patients with a family history of VHL type 2 or mutations associated with VHL 2. If you have a family history of VHL1 or in patients with mutations not associated with pheochromocytoma, you may want to be tested every two years.
  • Tests for pheochromocytoma before any surgery
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance.

15 Years Old and Older

  • Complete general history and physical exam, including blood pressure measurement and neurological exam, every year
  • Thorough eye exam at diagnosis and every year
  • Ultrasound of the abdomen at diagnosis and every year from ages 15 to 20
  • MRI of the brain and spine at diagnosis and then every year. If your doctor says you are at low risk, you may need an MRI every two years
  • CT or MRI scan of the abdomen at 20 or at diagnosis, then every two years. Alternate with ultrasound of every other year
  • Tests for pheochromocytoma at diagnosis and every year in patients with a family history of VHL type 2 or mutations associated with VHL 2. If you have a family history of VHL1 or gene mutations not associated with pheochromocytoma, you may want to be tested every two years
  • Tests for pheochromocytoma before any surgery and during pregnancy
  • Hearing exam at diagnosis and every two years or as needed. This should include an MRI or CT scan of ear canals if you have hearing loss, ringing in the ears, dizziness or problems with balance

If one of your parents has von Hippel Lindau disease, you have a 50% chance of getting it. Genetic testing is a way to look at the VHL gene to see if it has any changes. It is a good idea for all family members of a person with VHL to be tested.

MD Anderson offers advanced genetic testing to let you know your risk.

If you or someone in your family has von Hippel Lindau disease, we’re here to help. Call 1-877-632-6789 to make an appointment or request an appointment online.

Why Choose MD Anderson?

  • High level of experience with von Hippel Lindau disease
  • Specialized physicians, including highly skilled surgeons, with expertise in VHL
  • Integrated approach and personalized treatment for von Hippel Lindau disease
  • Advanced genetic testing and counseling
  • Clinical trials of new therapies for VHL

Von Hippel Lindau Disease Knowledge Center

Treatment at MD Anderson

Von Hippel Lindau disease is treated in:

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Von Hippel Lindau Disease Prevention

There are no known lifestyle changes to lower the risk of developing VHL.

Research shows that many cancers can be prevented. Visit the Prevention section of our website to find out steps you can take to avoid cancer.


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